My Story- The Other Side of Autism

In my last post, I described the social situations that led up to my autism diagnosis. This post will focus more on sensory differences, repetitive movements, and restricted interests.

“That’s not normal.” “Normal people don’t do that.” “Don’t be seen.” “Stop.” “Someone is looking.” “Disappear.” “Be like them.”

These thoughts and more, have flooded my mind over and over again for as long as I can remember. I have forced myself to fit in, stopped myself from doing things that seem strange to others, and carefully analyzed the world for signs of acceptance.

I feel like I don’t know myself. I don’t know what I like to do or what makes me happy. It hasn’t mattered up until this point. It wasn’t about me; it was about everyone else. Flapping is not acceptable; having a meltdown is not acceptable; refusing to try new things is not acceptable; reacting to loud noises is not acceptable; escaping uncomfortable situations is not acceptable; enjoying or seeking out certain sensory experiences is not acceptable. Acceptable- that has been the thorn of my existence, triggering the ultimate thought, “I am not acceptable.”

How did it come to this? How did I get to the point where I was afraid to do anything for fear of doing something wrong? How did I become so scared of being different that I felt like it would be better for everyone if I wasn’t alive at all? How did autism collide with depression and suicidal thoughts, resulting in fear, hiding, cowering behind a cover of normalcy?

Things have gotten better. Fear isn’t as strong as it once was. Suicidal thoughts aren’t as prevalent. But, I have yet to accept my differences.

There are so many groups, websites, and people promoting autism acceptance. They say to be yourself, to flap, to sensory stimulate, to do what comes naturally. I don’t believe it. As much as I try to believe that autism acceptance is possible, my rational brain rejects the idea. How could people possibly accept what they have told me for so long to hide? I am not strong enough to endure the criticism of allowing myself to appear autistic.

I have not done what I could have or possibly should have done to promote this blog. I convince myself that it is because I simply don’t have the time, but the truth is that a large, well-known blog attracts controversy. People will do anything they can to destroy any hope that threatens their perception of perfection. I have experienced this in my life and it has brought me into hiding. I hide my sensory, behavioral, kinetic differences in order to preserve them from being attacked, to preserve me from letting them die.

So I do not flap in public, but I flap openly in my room. I am also starting to do so more at work and church and school when I happen to find myself alone and the chances of being seen are relatively low. I do not rock in public, but I find a quiet, solitary place to release and calm down. I do not chew on pens or furiously scratch ink onto notebooks; instead I calmly draw little pictures, take pens apart and reassemble them, and silently trace little designs with my fingers. I do not twist my hands or do complex body movements to relieve tension; instead I crack my fingers, stretch, shift in my chair, and attempt to distract myself.

Is there such a thing as being free or is freedom learning to live within the structural, social, cultural, religious, and legal constructs of the world? I don’t know if this is freedom, coping, or hiding. I don’t know if this is ideal, disheartening, or simply necessary. I don’t know if it makes me happy or sad, frustrated or satisfied, anxious or relieved. I do know that it’s not likely to change soon.

I am not likely to suddenly start flapping in public or allowing my textural interests to show or talking about my specific topical interests for more than a few seconds or allowing my body to do complex twisting movements. I am not likely to allow myself to show that I am autistic. But, the thoughts of hiding my differences and forcing normalcy are becoming kinder. I am becoming kinder with myself, more understanding of my weaknesses, and more accepting of my sensory needs outside of the public view.

SensoryBlogHopNew

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

Want to join in on next month’s Sensory Blog Hop? Click here!

Advertisements

Wait… Flapping is Normal?

The other day my friend flapped. It was totally in public and totally natural and completely wonderful. I have no idea if she has autism. I sort of doubt it because she doesn’t seem to have any problems with socializing, but you never know.

The coolest part about this whole thing is that no one stared. At least not in a judgemental, that was weird kind of way. If anyone looked, it was simply to see why she was so excited.

And I just keep thinking, is that how it could really be?

Could flapping really be totally normal? Have I really been over thinking all this that much? Is it really that easy to just be yourself?

I don’t know. I really don’t know. But a part of me really hopes that this is not too good to be true. A part of me really hopes that I can one day get to that point. Until then, I am grateful for the hope that experiences like this give me.

For background on this post, read my latest post about flapping here.

Picturing People

The other day I was thinking about a friend of mine that I went to help with some cleaning. It was interesting though because this friend is in a wheelchair and has been for as long as I’ve known her, but when I pictured her I didn’t picture her in a wheelchair. In fact, I totally forgot she is in a wheelchair until I was trying to think of why I had helped her clean.

And I just thought… wouldn’t it be awesome if everyone could picture everyone like that all the time? What if we could all just see each other without our disabilities, without seeing what makes us different, and just see what makes us the same? How different would the world be if we could all see how we’re alike instead of how we’re different?

I know it sounds idealist, but if I can forget about someone’s wheelchair, I’m sure people could forget about my autism or depression or other faults. So maybe I don’t have to worry so much about all my differences. Because if I can picture other people without their disabilities, maybe they can picture me without mine.

Back to Normal

Well, things are pretty much back to normal. My friend has been able to get some help so she’s hopefully not going to be homeless anymore, which has definitely helped calm my nerves a lot. And life has more or less returned to the way it was.

In thinking about returning to normal, it occurred to me how abnormal that can seem for most people. I think sometimes people think that having a disorder or being different means that your normal isn’t the same as other people’s normal- that life is an innately different experience because we see the world differently.

The truth is that my normal is probably about the same as your normal (assuming of course that you’re a bachelorette in your 20s). Our differences don’t really make us as different as we sometimes believe. The stage of our lives can lead to more differences than a disorder sometimes. However, the more time I spend with older people, the more I realize how much we have in common. The biggest differences between ourselves and others are the ones that we create by our own perception.

Now I’m not saying that we’re exactly the same or that people with autism are just like everyone else. What I am saying is that no one is like everyone else. We’re all different- autistic or not. We all have our own personalities and likes and dislikes. We all have things that get on our nerves and things that we could do over and over. We’re all just people and normal for me may not be the same as normal for you, but it is normal nonetheless.

And if you’re curious as to what my normal is, it is basically the best life ever. I go to work, spend time with my nieces and nephew, watch movies, hang out with friends, go to church, go shopping, pay bills, exercise sometimes, and pretty much just do whatever makes me happy. Life is an amazing journey and I only hope that your normal is as awesome as mine. 🙂

A Different Outcome

As I learn more and more about autism and therapy- past and present, I’ve looked at how I grew up and how different it might have been had I been in different therapies. I was only in therapy specifically for autism once. It was play therapy and I didn’t see the point of it, so I stopped going. Other than that, my therapy consisted of the school speech therapist and the occasional psychologist.

Now when I say this I’m not saying that this is the ideal path for everyone with autism, but it worked for me. Although I think some additional therapy might have helped with certain things, I am at the age now where I can form my own therapy and work on things that I specifically need help with.

On the other hand, I look at some therapies used in the past and I am very glad that I was not involved in those therapies. I look at stories and videos of children having meltdowns and exhibiting self injurious behavior and I think that could have been me if I had been in a different situation. If people had tried to restrain me from being autistic, if people had tried to pressure me into situations I was uncomfortable with, if people had forced me into the mold they wanted to see, I think I would have had a lot more problems. I could see myself responding to those types of things with anger, aggression, meltdowns, self injury, and even hate and dissociation.

I have a very strong personality and I respond very negatively when people try to change my thought process or emotions. I need to change my own thoughts and emotions. Sometimes with help, and sometimes on my own. If someone tries to force me to change though, it usually makes my behavior worse.

I was very lucky to have grown up in a house where I was allowed to process things at my own speed and find my own way of responding to things. I was lucky to not have been put in a therapy setting where I was forced to comply to demands that I would have negatively reacted to. I was lucky to be challenged to grow within my own realm instead of being forced into a different world that I did not yet understand and pressured to grow there. I was very lucky.

I didn’t start researching autism until I became an adult and learned about autism in my college classes. I had no need to research autism before that. I had no need to understand autism. The only thing I was worried about understanding before that was myself and the world around me. And I am grateful that I didn’t worry about autism back then because it’s a lot to handle. All the information and stories and articles and studies and blogs and comments and videos are a lot to handle. Knowing you have autism is one thing, but knowing autism is something completely different.

Now that I know autism better I am so grateful that my family didn’t treat me as autistic. I am grateful that my diagnosis didn’t change my life. I am grateful that I was able to develop in the way I needed to in order to become the person I am today. And I only hope that others will be as lucky as I was.

Sometimes you forget

The past few days have been incredibly hard for me. I don’t know if it’s because I haven’t been sleeping as well as I normally do, but I’ve been more emotional than usual over the past week or so. I’ve had a couple of meltdowns and a lot of times where I wanted to have a meltdown but was able to distract myself instead.

The thing is that sometimes you just forget how hard it is to have autism. You forget that you even have autism sometimes. When you’re able to live life in the same world as everyone else and do what other people do, sometimes you forget how hard some things are. You forget that what comes naturally to some may not come naturally to you. You forget that you may take things more personally than someone else. You forget how hard you have to try to say the right thing all the time.

Sometimes you forget how to act normal. You forget that normal people don’t think like you. You forget that what comes naturally to you seems strange or awkward to others. You forget that other people don’t understand you and that you don’t understand them.

You just forget how hard life is sometimes. And then… you get that reminder that you’re different and will never be “normal” and the world seems harsh again. Sometimes I want to just disappear to my own world where things make sense and people aren’t difficult to understand and I don’t feel inadequate all the time.

Sometimes I just wish that people could see what my normal is like. Maybe if other people lived in my normal world, they’d see how abnormal their world actually is.

This inspired me to write a poem which you can find on my other blog at http://underthesurfacepoetry.wordpress.com/2014/07/18/your-normal-world/

Simple

I have often said that I am a simple person. Some people may disagree with that statement, but I feel it to be the core of who I am. I may sometimes seem complicated or hard to understand, but the reasons behind my actions are usually incredibly simple. I don’t know if my simpleness stems from autism or simply from my personality, but I guess you can decide what you think about it.

So, how am I simple?

1. I have simple pleasures.

  • I like soft things. I like the feel of a fluffy blanket after a rough day. I like hugging a teddy bear or a pillow. I like running my fingers through the soft fibers of things around me.
  • I like food (most of the time). I like the feeling of chewing. I like the sensations of sweetness and crunchiness. I like the smell of my favorite meals or the ripeness of a beautiful fruit.
  • I like beautiful things. I like watching the sunset or picking shapes out of clouds or examining the flight path of a bird. I like seeing the budding of a flower or noticing the patterns in my skin.
  • I like being alive. I like the feeling of relaxing and breathing deeply. I like hearing the beating of my heart or feeling the flow of blood in my veins. I like feeling the movement of my legs pumping as I run or the bounce in my stride when I walk.

2. I’m not really a deep person. I just see things in the world around me that others may not notice.

  • I notice the beauty of nature and comment on how it reminds me that God is the greatest artist to ever live.
  • I notice connections between shapes and patterns and facts of life.
  • I understand the pain and the hurt and emotions of others because I recognize them from having those feelings myself.

3. I’m straightforward and simple in how I say things.

  • I write my insights in a simple way and my poetry is straightforward and easy to understand.
  • I’m not good at being abstract and I tend to answer questions directly rather than jumping around the topic.
  • I’m not good at telling white lies and generally tell people what I really think when they ask me something.

4. I simply express my emotions.

  • When I’m sad, I don’t pretend to be happy. I may not want people to know I’m sad but I don’t pretend to be something I’m not.
  • When I’m frustrated, it’s pretty obvious that I’m having a rough time.
  • When I’m happy, I can’t help smiling and laughing.

5. I’m still a kid at heart.

  • I still like to play and have fun.
  • I like listening and singing to children’s songs and and watching animated movies.
  • I like spending time with my family and friends as often as possible.

 

I don’t know if me being simple is a good thing or not, but I like being simple. I think I’m a pretty easy person to read and I wish I could read others more easily so I could understand them better. Maybe if we were all simple people we could understand each other more and be more accepting of differences. I think sometimes people may get frustrated with my straightforwardness or that I show my frustrations with meaningless things, but it’s who I am and I wouldn’t change it for the world.